Caring for my mother with dementia - a daughter's diary

I'm nearly ninety-one, already older than my mother was when she died after six years increasing dementia.

I lived about 50 yards from my mother's bungalow, occasionally sleeping there when I believed it necessary.

I spent most of every day with her, but in our house I had my husband Alan, not yet retired, and our youngest son, Gavin, who was still at school till he left for University before my mother died.

In a sense, I was running two households, especially when mother's dementia progressed.

I needed to make her meals, deal with her washing, put her to bed and get her up in the morning.

In the last year and ten months of her life, she was in a care home. This was on our doctor's advice as it needed two people to get her bathed and toileted without causing any injuries. I did have help from Social Services but it was limited to particular times. 

Our relationship

My mother and I were always very close and she became a loving grandmother to our five children. She lived long enough to see three great-grandchildren, though when I took my six-month old baby granddaughter to her in the home in her last days, she made little response, which was very sad.

She had been a wonderfully selfless character, always helping others, with a lovely sense of humour, bright and creative, a very good artist, full of activity.  

Because of her habit of constant activity, the onset of dementia quickly made her very frustrated that she couldn't achieve what she wanted to do.

Without the dementia, which meant she eventually stopped eating and drinking, I know she would have lived much longer.

Keeping a diary of my mother's dementia

To keep myself sane I wrote a diary of some of my mother's sayings and doings.

From time to time I look at the little book it became because I want to remember how much I learnt from the experience of caring for her. It was a lesson of love.

I tried often to make my mother laugh, but it was getting much harder.

But there were comical little signs of self-awareness still. The next time she lifted her fists in anger she dropped them suddenly and said, ‘No, I don’t do that, do I?’  I said, ‘No, you don’t.. That’s not you.’

On 23 October, we had another beautiful autumn day.  

The diary reads...

I put her into her coat, gloves, hat and scarf after lunch and let her sit on the seat on her south-facing patio while I tidied up her garden and swept the paths, keeping in sight of her all the time.  

She actually called out, ‘What can I do to help?’ I couldn’t think of anything and she didn’t repeat it but it was a change and showed she was feeling lively.  So I suggested a walk and she came gladly.  

As we approached the hill in front of our house, she said, ‘Poor old lady going down the hill.’  I said, ‘Poor old lady has to come back up which is worse,’ and she almost laughed.  

I said, ‘You laughed.  You really did.’  
She said, ‘I don’t think I’d have done a thing like that,’ laughing some more.

On our return she protested - but in a good-humoured way - when I removed her outdoor things, so I stuck her hat flat on top of my head and she laughed outright.  

We had a cup of tea to warm us up but she didn’t start hers.  I said, ‘Drink your tea.  It’s lovely.’  

She clasped the cup with her hands and said it was too hot.  

‘Try the handle,’ I suggested, but she didn’t seem able to find it.  I said, ‘Well now, how are we going to get that nice tea down inside you?’  And she said with a little laugh, ‘I don’t know.  I can’t see it ever happening.’

Helpful, happy moments

Moments of happy banter like this were rare, but they helped me to feel that the Mother I knew was still with me.  

I needed her companionship in the long days alone with her, yet for so many sad hours the being who was there was a lost, unrecognisable soul.

No part of my experience of caring over the years – in teaching, in the upbringing of children, in work I did with young delinquents on Community Service, even in eight years of looking after old people when my husband's mother and stepfather lived with us till their deaths – none of this was like caring for someone with dementia.  

I was feeling my way in the minute by minute interaction with a changed mother, and in learning and applying my lesson of love I was still a stumbling novice.

If you have a question about dementia or need some support, call our helpline to speak with our expert advisers, or join Dementia Talking Point to chat with other people in your situation.